My epilepsy and Me: Hearing from adults with intellectual disability

Abstract

People with intellectual disability make up a significant percentage of those with epilepsy. The co-occurrence of these conditions presents distinct challenges in terms of health literacy and accessing healthcare. Easy-read documents have been proposed as a means to improve health literacy and facilitate engagement in healthcare for people with intellectual disability. This study aimed to interview people with these co-occurring conditions directly about their experiences and opinions regarding their experience with epilepsy and where and how they access epilepsy related information and healthcare, specifically easy ready materials. Reflexive thematic analysis was used to analyse interview transcripts and identified three themes and five sub-themes within participant responses. The primary themes were 1) Lifelines Matter − referring to how the knowledge of healthcare options and seizure management strategies impacts upon perceived overall experience of epilepsy, 2) Doctors are Indifferent, which encapsulated how participants interpret their interactions with healthcare professionals and 3) We Want Information, which spoke to participants’ enthusiasm to learn more about their epilepsy and engage more meaningfully in their healthcare planning. These results were consistent with, and provided additional context when considered alongside, previous literature. This study was novel in its exploration of the topic of health literacy as it relates to people with intellectual disability and epilepsy. Future research should aim to consult people with intellectual disability and epilepsy on the development and implementation of easy-read materials in healthcare and assess how the implementation of these materials may impact upon health literacy and, furthermore, overall healthcare experiences for this group.